Hello, I am new here. I am 2 years into my struggle with what I assume is vestibular migraine.
I am at my wits end and I feel like my life is falling apart. I have completely lost myself.
It started 2 years ago. I had recovered from a bout of COVID. Around 2 weeks later I began feeling light headed and dizzy. This progressed to severe stabbing ear pain on the right side and I guess, a loss of balance. I felt like my legs were wobbling, brain fog, head pressure and a dropping feeling.
It would feel like I was swaying / rocking when sitting or lying still.
Slowly over the course of 3 months it went away. I carried on working throughout as Iām a single parent, I had to go on. My GP suggested post viral labarynthis? Although my hearing was always fine.
I fully recovered over the course if a few months until Easter when I got another cold. Like clockwork a week later all the symptoms came back! Ear pain, head pressure, floaty, wobbly when walking, dizzy , dropping feeling.
Again I worked through it. After a few months it went away.
Then this cycle repeated, illness, symptoms return, recovery over months until this lady summer it became chronic. My symptoms never went away completely. I had better days, but never 100%.
I have always been a headache person, never migraines.
I have also always been a car sick, motion sickness person, could never do rollercoasters.
Anyway, I noticed headaches increasing.
I am a āscientistā I also have a degree in audiology and vestibular science. So I decide I would put myself on a migraine diet. B2, magnesium, coq10 and vit D.
This helped with the headaches. I found some triggers such as gluten, chocolate, caffeine, processed foods, dairy.
Since beginning this strict regiment, I had some days where I felt 80%.
It is a now at a point where they come in āattacksā.
I get the stabbing pain in my right temple, ear pain and then the heavy, foggy head. Then the balance and coordination goes.
I saw DR S over the summer, he said itās probably vestibular migraine, although Iāve had no formal testing.
He recommended Candersarten. It made my blood pressure far too low, so stopped that.
GP then suggested amitriptyline. But I have a bit of a funny hear rhythm (runs in the family) it made it worse plus it gave me an itchy rash. So scrapped that.
Iām now trying pizotifen. 0.5. Iām a week in and I think this is the worst Iāve felt in two years and Iām honestly at my wits end.
I am a teacher so my job is stressful but I am a single parent to an 11 year old with no family support so I cannot take time off.
I am terrified Iām going to lose my job. I am on a final warning for sickness plus they donāt believe Iām fit for the job (probably true right now)
But if I leave/ lose my job, I have no savings and we will lose our home plus Iāll lose a career I love and have worked very hard for.
Iām devastated.
This condition, whatever it is has completely taken my life away. I used to be active, climbing mountain, gym, walks. Me and my daughter would travel, have adventures and Iām now a quivering wreck.
I now suffer with severe anxiety( new since this condition arrived) and I would say Iām severely depressed.
I have 2 weeks off this half term so though pizotifen might help but this is the worst Iāve felt?
Does it get better?
I have brain fog to the point I hit the accelerator instead on the break pedal this morning, I left the keys in the door, the cooker on, Iām slurring my words. I feel like I could sleep all day long. My head feels heavy and it feels like the world is not ārealā I feel detached.
Iām also having terrible paresthesia.bits driving me crazy. I donāt feel like I could work at all or Iām safe to drive. I could actually function before I started taking this medication so I donāt know what to do.
If anyone got this far, thank you.
I just want my life back. Iām feeling so desperate and alone, dragging myself through each day. My life has fallen to pieces.
I donāt know whether to quit this medication now before it makes things worse permanently.
Any help or advice would be so welcome.
Thank you.